As you see, I was sent a comment a couple of weeks ago by Rachel, and I thought what she said was so relevant to many people with a GBM (the most aggressive form of brain tumour, which I have), and their families, it was worthy of a separate response.
August 13, 2013 at 12:36 PM
I am posting from Melbourne - I read your posts and so enjoy them. My Dad, aged 68, has GBM.
He has just declined Avastin as a final treatment option - he was diagnosed in March 2012. We are now just going to back off anything to do with hospitals and appointments and let him be at peace on his own terms as much as possible.
I think its natural to wonder what if he did just try Avastin, but its his choice, and I respect that. Your insights are so valuable - thank you for sharing them. I wish you and your wife all the very best. x
|Avastin works differently from chemotherapy.|
Don't worry - that's not what the posting's about!
I know because I was in that bracket when I had to make a choice.
The problem: is the cost of the treatment worth it?
It's a decision that in the end must be left to the patient, who should not be pushed into a decision one way or the other by any other person. They should consult whoever they like about it, but no-one else should make the choice for them, nor try to.
Rachel and her family stood back, and let him make it. They would have had their opinions, and they were entitled to express them of course. If he chose to go ahead with the treatment, as long as he could finance that decision and not impose on them, that's where their rights ended.
Rachel didn't say why her Dad opted not to try Avastin, but his choice was his business and not mine.* He may not have told his family why. His choice again.
I agree with Rachel that it's natural to wonder whether Avastin was worth a go for him, but the choice for many depends on a number of other factors. I already mentioned cost and age, but let's try to list some:
* other medical conditions
* concern about side-effects
* belief that primary life goals have been accomplished
* religious beliefs and/or personal philosophy
My choice to try it was based on these considerations:
* I could afford to experiment with one dose of Avastin
* Tracey and I were in full agreement about trying one dose and observing its effects
* I was fit and healthy when the tumour was diagnosed
* I was prepared to risk side-effects
* In terms of quality of life, I was at a stage when I made the choice where I had little to lose
* there were no indications of any other problems likely to develop with or without Avastin
* I had tried every conventional treatment and had no faith in others, especially those where heavy costs were involved with no reasonable evidence of success
* I was excluded from trials by conditions set by trial researchers – usually age
* I was in any case in no condition to travel for trial treatment
If I had had a negative reaction to Avastin, or there was no evidence that the $6,000 shot had done any good, that would have settled the question once and for all. Many with GBMs get no benefit from the drug. It would have been worth $6,000 just to know that.
Ironically, the risk in my decision was that the first Avastin infusion might have the positive effect we'd hoped, which seems crazy, I admit. But when you're in this position, it's not quite so odd. I'll return to that.
I think the worst result would have been a small or apparent gain that did little to improve my quality of life but gave some hope, probably unjustified. Would another dose improve things? Or would it just be a waste of money we couldn't afford to spend? Not one person in the world could have predicted.
Fortunately, that didn't happen.
What happened was that the first dose of Avastin was a resounding success. From a medical point of view, it was obvious that we should continue with the treatment. No doubt about it.
We didn't know how much extra time it would give me. It was possible that its benefit would end within a couple of months, or it could have gone on for longer. There was no way that we could know. Unless something like a heart attack or stroke happened to end the program almost immediately, it would've been mad not to continue. After all, an Avastin infusion every three weeks does not have the debilitating effects of most forms of chemotherapy.
The only thing that stood in our way was the cost, and that was my dilemma. We were looking at an outlay of $25,000 at least, within three months. It was an amount I could have scraped up from somewhere, but at a cost that would have put my family into significant hardship. Christian was still at high school, and Tracey would have been left with not enough to live on after I was gone, faced by the usual – and rising – costs of living.
I don't know how much you know about the rest of this part of the story, but I will just say that family and friends got together to make donations and have a benefit night which raised a substantial part of the $25,000 needed. We knew we'd be able to stretch finances to close the gap at the end. We knew that we were not financing a possible cure but a possible extension of reasonable quality life.
A large number of brain tumour sufferers are simply not in a position to do that, or to be as fortunate as I was in having generous groups and people who were willing and able to help. Others prefer not to take the risk that a significant amount of money will be wasted for very little if any gain.
This brings me back to Rachel's Dad's decision not to have the treatment at all. He made his choice and I'd most likely back him to the hilt.
There's no doubt that I've been very fortunate with Avastin. I don't know of anyone my age who has gone on for anything like the length of time I have.
In the three years I've been on the drug, I've had relatively little discomfort from the Avastin itself. Without the protein excretion tests on my kidneys every three weeks, I doubt if I'd known there was any attack going on to them at all. Over this time, using the drug has caused plenty of indirectly related and serious problems, though. It's not been all beer and skittles. Far from it.
So now we continue to play the delicate balancing act we have been engaged in ever since we knew that Avastin's positive effect has diminished, and its negative ones have come to the fore.
Thanks for giving me the impetus to write this, Rachel.
*Incidentally, when doctors get what they believe to be untreatable cancers, they often adopt the same decision as Rachel's father, so he's in good company.
Food for thought on taking responsibility for our own lives, Denis, and the decisions that go with it. Too many people expect others to make decisions for them - their family, friends, doctor, financial adviser, even the government. The bottom line really is that nobody else can weigh up your situation, understand your feelings, as well as you can yourself. So it is the individual's absolute prerogative to make their own choice. When you do that, you can accept the consequences - good or bad. This is one hell of a lot better than kicking yourself for allowing another to push you into what, retrospectively, turned out to be the wrong decision. (Sorry, teacher, today's sensitivities are making a mess of my syntax ... his, hers, you, yours, their, one's, an individual's! ... but then, a persons got to do what a persons gotta do!).ReplyDelete
Bob: hi – a couple of points:Delete
It can't always be an absolute prerogative, because you've got to take the needs of other people in your life, especially those you are heavily dependent on, into account. I guess your comments come under this qualification.
We just never know what's a right and wrong decision, but as the person in the gunsights, I have to weigh this up taking into account everything I think is relevant. It gets harder as the disease progresses and I'm still here. I want to be here as long as possible, but with a fair quality of life and be a bearable person to live with.
I suppose the position of the brain tumour is important in any choice to extend life, if possible. If the tumour is in the cognitive part of the brain, then extending life with Avastin might not be a good choice. Mercifully, Denis, you tumour does not seem to be affecting your reason, imagination, and creativity, although I know you lament the loss of memory. Also, it spared your left hand while impairing your right hand from the beginning, and you are left handed. As you say, every person is different and will make choices accordingly.ReplyDelete
Avastin has allowed you considerable quality of life, given your situation, and has made it possible for you to give a lot of comfort, inspiration, knowledge, entertainment and perspective to a wide audience. As I said before, I would prefer that you were making Tabby Cat films, but since that cannot be, the Blog is a treasure that the world would be far poorer without, and, for that, I thank Avastin and your decision to take it.
Joan: the original position of the tumour is vital, but as it grows and where it expands to add to the complexity. It doesn't just expand, but like weeds that sneak along under the ground and pop up some distance from the original plant, it can turn up somewhere else in the brain altogether. This is the extended nightmare part of the brain tumour affliction.Delete
Extending life for its own sake, which is a mantra some people cling to and horrifies me, is insane in cases like this. But we always have the face that question: when has it been reached? There are fair answers to this question. Save me from these life-at-all-costs people. If evil exists, it is in this twisted notion of caring.
Yes, I regard myself as relatively fortunate, even within the cohort of GBM4 sufferers. At the moment – and I must stress those three words – my functions have been and are being whittled away slowly. I imagine that while I'm on Avastin, there's a reasonable chance that that will be how the disease progresses. But even then, there will be the time when the quality of life meter slips into the red zone. How exactly will we measure this? That question is the most important and enigmatic in my life.
Without comment on quality, there is no doubt that I'd like to reopen the door which slammed shut on 3 December 2009, on the life I'd like to go back to [but with the knowledge and insight gained since!] - but that's not possible.
What people call miracles I call wonderful unexplained – possibly unexplainable – events. I don't expect miracles in my case. But there's no denying that Avastin has given me something that up to now has been wonderful and precious. For Tracey, it can only be described as a mixed blessing.
Hai there, Denis!ReplyDelete
I just popped over, from the depths of cyber-space, to nosey about & see what you're up to.
You come to mind, from time to time. I still have some advice - copied by hand onto paper & pasted to my work computer screen - that you gave me last year (or was it the year before?) via a tweet when I was tackling some essays for my undergrad. Good advice it was too. Thank you for sharing.
Anyhow, I won't keep you. Though I thought that, this time I'll leave a comment so you know who's been sniffing around!
I shall keep you in my mind. It's nice having you & your considerate advice & jolly goodwill in there. And, of course, I shall pop by again later.
Cyber-love to you & yours,
Suzanne! We are 'old' friends. Why are you now avoiding the cafe where we ran into each other occasionally? It is very good to see you. With a little bit of luck – no, if you drop by again – we'll be able to say hello more often.Delete
That's so kind, thank you. It's really nice to see you again too ;)Delete
And do you know what ... I have missed you & the old cafe crowd, so have returned.
Do be sure to turn me off - it's just past gin o'clock here so my predictable babble shall soon start.
I have pondered this posting long and hard and read what the others have written too - and find Rachel's comments match my own thinking. One of the most helpful things you've done on this blog is to introduce the rest of us to the good and bad sides of Avastin - a name which most of us would never have heard if not for you. Your post sort of answers some of the questions I've wanted to ask in the past three or so years but never quite dared to do ...and the chief of them I suppose is whether, looking back, you believe you and Tracey made the right decision. I think what you are telling us is that you DID, while making it clear that there are many reasons that govern that decision. That it has given you a considerable extension of life over what you would have had without Avastin. But perhaps more importantly - and correct me if I am wrong - a factor that weighed strongly with you (as touched on by Rachel) is that Avastin has been instrumental in maintaining a better quality of life than you might otherwise have had with this tumour - that it has stopped the tumour taking over too quickly and sending you - not to put too fine a point on it - doolally! Taking away all useful functions including cognitive powers. I do feel that should I ever be afflicted by a GBM my decision on whether or not to take Avastin would be much more informed thanks to following your blog.ReplyDelete
Julie: thank you. Avastin is a name that I wouldn't have thought about either four years ago, and if someone had told me about it, I'd have computed it just fine – a drug that was good for cancer patients – but of course, we aren't talking about me. A brain tumour? It couldn't possibly. Not to me....Delete
I like direct questions. Did Tracey and I make the right decision? Let's put it the other way – what would have happened if we didn't?
If we didn't, the probability would have been that there would have been a funeral notice in the paper somewhere between October and Christmas in 2010 inviting all to attend. Everyone would have agreed, except those who know me best, what a jolly fine chap I was and what a pity etc etc and there'd have been a little weeping and everyone could have gone about their business again. Exactly as it should be.
But we took the decision and here I am still, after the comparative improvement followed by a slow and steady degradation of my physical capacities, all because the dominoes started falling again within months of September 2010 (when I had the first Avastin dose).
This blog and all its contents is the result of resolving to do two things – to tell little stories of my life and my philosophy, and to document from the inside the Avastin experiment for as long as I can.
For me it's been much more – a serious journey within. I've had nearly four years to contemplate life and death in a way I wouldn't wish on anyone. Few people get that chance.
But the cost has been great, and it has been born by Tracey. She's been the one who's had to do everything – and even worse, that role will increase in every way as the disease progresses. There are no prizes at the end of it. No spouse coming home cured, or even improved at the end of it all. That's the fate of all carers of terminally ill people, and this illness can be one of the most unrewarding of all for the carer. If the carer is partner, the added burdens are immense. But I've said enough for now.